Motivated by the daily sufferings of one of her relatives diagnosed with Rett Syndrome, 17-year-old Hadiyyah Mohamed is determined to raise awareness about this condition in Guyana.
Rett syndrome is said to be a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect including the ability to speak, walk, eat, and even breathe easily.
In an effort to raise awareness about this condition the teen decided to launch a charitable organisation called ‘Precious Angels’.
Yesterday the organistion hosted its first awareness walk and fundraising activity – a cake sale.
Both events attracted the support of excess of 300 persons including representatives from other charitable organizations such as: Diamond Special Needs School, Met Pride Academy; Harold B. Davis Special School; Gifted Hands Learning Centre.
Also attending the event were officials from the Speech Department at the Georgetown Public Hospital Cooperation (GPHC).
The walk saw the supporters moving off from the Carifesta Avenue Everest Cricket Ground and continued along Camp Street where they continued up North Road before returning to the Cricket Ground where the cake sale was held.
In an interview with this publication, Mohamed said that although Rett Syndrome is prevalent in the Guyanese population, the disease is rarely talked about and that needs to be addressed.
“When someone is diagnosed with this kind of disease it creates a financial strain on the family because it costs a lot to be diagnosed. I want to use Precious Angels as an aid to assist those who are suffering with this disease…I want them to know that somebody cares about them.”
Most babies with Rett syndrome seem to develop normally for the first six to 18 months and then begin to lose skills they previously had — such as the ability to crawl, walk, communicate or use their hands.
Over time, children with Rett syndrome have increasing problems with the use of muscles that control movement, coordination and communication. Rett syndrome can also cause seizures and intellectual disability, abnormal hand movements, such as repetitive rubbing or clapping.
Although there’s no cure for Rett syndrome, potential treatments are being studied. Current treatment focuses on improving movement and communication, treating seizures, and providing care and support for children and adults with Rett syndrome and their families.
Speaking with this publication, Mohamed said that there was a time in her life when she did not even know that there was a disease by this name until her niece, six-year-old Amani Mohamed, was diagnosed.
“When Amani was born she was perfectly normal but at age two all this changed. She started to lose weight, lost her hand movements and stopped making eye contact.”
“For Amani to be diagnosed with Rett Syndrome we had to go till to Trinidad… and I know that a lot of persons cannot afford that but if everyone come together Precious Angels will help,” said Mohamed.
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